A set of principles to help put people at the heart of new data-driven technologies used in health and care has been published by the Academy of Medical Sciences (AMS) in their report Our data-driven future in healthcare.
The principles were developed through a series of dialogue workshops with the public, patients and health and care professionals. The findings of the dialogue work can be found here.
The principles are aimed at those who develop, evaluate, regulate and commission new and future health technologies. The report calls for meaningful engagement with patients, clinicians and the public on the scope and value of data-driven technologies in healthcare.
The principles reflect five themes, stating that data-driven technology should:
- Support clearly defined purposes that uphold the social values of the NHS and benefit individuals, the NHS, or society.
- Respect and protect the privacy, rights and choices of patients and the public.
- Include patients and the public as active and meaningful partners.
- Maintain trustworthiness in the responsible and effective stewardship of patient data within the NHS.
- Incorporate mechanisms for evaluation and regulation that build public understanding, confidence and trust in these technologies, and guide their use in the NHS.
Include patients and the public as active and meaningful partners
The expectations, perspectives and concerns of patients and the public are vital to the conversation on new and future data-driven technologies in health. This is not just a ‘nice to have’. It is an essential part of building a trustworthy system that can realise the benefits of new technologies.
The Our data-driven future in healthcare report focuses next steps on patients and public as being partners:
“Ongoing and meaningful engagement of patients, the public and healthcare professionals as active partners is a key requirement to ensure the successful realisation of these opportunities. This will enable a sustained dialogue about the use of these technologies, which are likely to evolve in ways that may not be predicted at present, potentially raising wider questions about their implications for individuals, health and social care and society.”
Engagement is critical as new technologies gather pace
The set of principles is timely. It follows the release of the initial code of conduct for data-driven health and care technology and The future of healthcare: our vision for digital, data and technology in health and care.
Understanding Patient Data looks forward to helping put these grounding principles into practice with AMS and others. Much work is needed to explore the implications of data-driven technologies with the public, and to explore publicly-held views, expectations and aspirations.
Read the Our data-driven future in healthcare report.